Hi - I'm new

[glo]

Found this board the other day. Seems to be a great group of people.

Sorry this will be a long message, but I need to vent.

My husband was recently diagnosed with lung cancer. He had been receiving treatment for COPD for about 3 years. In March he began having pain in his back, near his shoulder blade, which he didn't feel was muscle strain, but thought it would pass. At his regular April 15 checkup he asked the doctor about it and the doctor thought he might have twisted wrong or something and separated some ribs. He gave him a shot of something? prescribed some Vicodin and said if it wasn't better in a couple days call back.

When he called back, the office staff gave him a referral to physical therapy without x-rays

The first few visits they had him do exercises. When he told them the exercises caused pain they said to stop and they applied some type of patches (he thinks something "ionic") which totally stopped the pain for a while, but on subsequent visits they couldn't seem to find the right spot again and the patches no longer helped. They said they would call his primary care doctor and tell him to do diagnostics. Receiving no call, he called and told the staff that he was in pain and almost out of Vicodin and PT could not help him. Still took them a couple weeks to get him in to see primary care doc.

Doctor walked him next door to x-ray lab and told them to do a chest x-ray at once. They returned results to him immediately and he said the pleura was inflamed and there was scarring on the left lung. He thought the scarring might be from his bout with pneumonia a couple years ago.

Requested authorization from ins. co. for CT scan. Took over 2 weeks to get the appointment (doctor says ins. co. denied request and he had to argue with them) Vicodin prescription renewed several times during this period -- pain increasing all the time.

July 18 discussed CT scan result with primary doctor. It showed tumor at top of left lung, eating into ribs and scapula. Doctor gave a new prescription for Norco and Clonazepam, and referred him to an internal medicine doctor who is board certified for pulmonary medicine.

New doctor explained types of tumors and set appointment for biopsy to determine type and stage so that treatment could be explored. Pain was relatively under control at this point, but within next couple days increased greatly. Dr. authorized Norco to be taken every two hours, and if Clonazepam makes him too sleepy -- it was knocking him out a majority of the time and taking away his feeling of controlling his own treatment -- he could take it just at bedtime.

Biopsy performed 6/28 -- despite calls to both doctors' offices and refilling Norco and requesting other pain killer -- Duragesic (Fentanyl) patches -- not until this morning were we able to discuss the results of the biopsy. Dr. confirmed that it was cancer -- yeah, we know -- and said it's Non Small Cell -- probably squamos cell -- and stage III or IV. Doesn't think it's operable, but suggests radiation. He'll arrange visit with radiology oncologist.

He didn't seem to want to talk further -- I got the feeling he thinks there's not much to be done. I see no point in discussing with him because he's not the one who'll be doing future treatment, but like all of you on this board there's no way we're not gonna push for any and all treatment available.

I've told both doctors that treatment has to begin quickly because his pain increases daily and he already can only sit upright for about 5 minutes before he has to lean back or lie down. God bless whoever invented the recliner chair!

I've also told both doctors offices to get used to me -- because I'll be on the phone every day until I get the oncologist appointment. I've been a basket case -- calm times getting shorter and panic times longer, so last week got a prescription for some generic zanax which takes the edge off. I'm psyching myself up now out of sniveling stage to "give us action or plan to spend a loong time explaining to me why not".

We're blessed with a wonderful 28 year old daughter who lives in town and she and I both have state jobs which allow us a lot of leeway for time off.

I'd appreciate if anyone who has had similar experiences could help us know what to expect from the radiation and what questions or demands to make of the doctors.

Thanks for being here.

[AdaW]

Dear Glo,

I believe you really need a second opinion here, preferrably with a Lung Cancer specialist. Please contact ALCASE, www.alcase.org. I think they will have names of doctors in your area that will be able to help you. Also, it's important for you to keep your own records of all reports, doctor's notes, scans, x-rays and biopsy slides. You never know when you'll need them in the future.

Take care. Thinking of you.

Ad

[bengel]

Hi glo,

Sorry to hear about the run around your getting. With all of the resources available in the Bay Area I would expect that you can get more information and referrals. I've had great doctors with second opinions so keep trying. Cancer is one disease where you have to be proactive which it sounds like you are. This is a great site with lots of support.

Keep the faith knowing that our help is in the Lord.

Bengel

[Guest DaveG]

I would get to the closest University of Caligrnia Cancer Center and seek the best opinion you can get. Many of the University Cancer Centers are Comprehensive Cancer Centers, which mean they have greater resources available to them.

I can only relate in turning to a Comprehensive Cancer in that I did exactly that, when it was discovered on April 2, 2003 that my cancer had recurred and had spread to my lymphatic system. I go to the University of Wisconsin Comprehensive Cancer Center under DR. Joan Schiller, one of the top lung cancer specialists in the US.

Contact ALCASE for references as well at 800-298-2436. Tell them your story, where you are and they will help you.

There is nothing wrong with a second opinion, but I would highly recommend getting an oncologist involved. You have many options and should review them all before jumping.

Good luck and keep us posted.

[glo]

Thank you Ada W.

I do, indeed, intend to seek a second opinion.

And yes, am realizing how important it is to get things in writing and get copies of reports. I now take notes and go to the computer right after each visit or phone call to type them up. Along with documenting his condition each day.

Have not yet gotten copies of records, but it's one of my next steps. I'm not at all confident that our primary care doctor handled his treatment correctly from the start.

We belong to Blue Shield HMO and the practice group we've been with does not seem to have many specialists in any areas. So I'll be contacting them to see about switching to another group. UC Davis Medical Center here in town is a teaching hospital, and I noticed the other day a large building downtown titled Sutter Cancer Center, so I have some research work cut out for me.

Of prime importance is that my husband in no way feels this is hopeless and he's ready to do whatever it takes.

Thanks again.

[Guest DaveG]

Good on the medical centers. I would be heading to one of the two for the that much needed second opinion. I have heard of both centers, so I doubt if you can go wrong. There is nothing wrong with teaching centers. My Oncologist is also a Professor of Medicine at the U of Wisc School of Medicine.

[JudyB]

glo,

I agree w/everyone. You need a second, if not 3rd, opinion. Sounds like you need an oncologist to oversee everything. It also sounds like chemo would be in order, too.

Go to that Cancer Center! Don't panic and feel like you need to rush. As I understand it, squamous is slow growing. It's better to get properly staged, than to speed up things.

Let us know how things go.

JudyB

[bobmc]

Hello Glo,

My very best to you and your hubby, so sorry you have been getting the run around. On top of everything else you certainly don't need that.

I'm so very glad you found us, you will find support, good information, caring people and most important of all SURVIVORS.

I agree with Dave, a cancer center will get you dr.'s that know how to treat this disease. Your husbands cancer needs to be staged correctly and it should be done as quickly as possible. I think your right in calling your insurance co., I'd let them know right off the bat that your dealing with lung cancer and your not happy with the treatment / service that you have been recieving.

I was also diagnosed with NSCLC- Squamous type and that type is a bit slower growing and spreads less quickly, if that's any comfort. However, it's still lung cancer. Hang in there and know you are not alone, and again glad your here!

God bless, be well and you and your husband will be in my prayers.

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

[Don Wood]

Hi, Glo (is that short for Gloria? My sister's name.)! You sure got the run-around. I agree that you need to have a general oncologist running the show with you, and you need to get out of the system you are in -- medically speaking. You both have the strong spirit it takes to see this through, from what I read in your note -- that is a plus. And you are a great advocate for your husband, which he much needs -- another plus. As you have already learned, you and your husband must take control of his treatment and take the medical field as consultants and advisors. If they are not as aggressive about the treatments as you are, fire them and get others who will. Good luck and keep plugged in here. There ismuch info and support. Don

[glo]

Thanks to all who replied. And yes, Don, my name is Gloria.

I'm 60, my husband is 65.

We made a trip to the emergency room today, because even though he's on two 50 mcg fentenyl patches every 72 hours and Norco every 2 hours, he could not get relief from the pain today. Every breath and movement hurt and when he used his combivent inhaler it hurt a lot to breathe it in deeply. Our niece who is a nurse in Tyler, Texas had told us that she felt the Norco as breakthrough medicine was not effective and he probably needed Roxanol or another form of morphine.

The ER doctor contacted our primary care doctor and gave my husband a shot of Dilaudid and a prescription for Roxanol -- guess niece knows her medicines. He said he can still take the Norco also if needed. ER doctor asked if we had seen an oncologist and I told them we received a call today confirming that the referral had been processed and the oncologist will call us. I have his name so if he doesn't, I'll be calling him tomorrow. The ER doctor asked if hospice had been mentioned to us and said the oncologist will probably offer external radiation as palliative care. BUT I think he had no biopsy report -- just had talked to our primary care doctor. I certainly intend to seek another opinion and also to explore all options for treatment.

The new medication did seem to give him some relief and he was able to sit up in a chair for at least half an hour this evening. First time he's been able to do that for several days. He's very shaky on his feet, but insistent on doing as much of his own care as possible -- really only lets me cook and bring him food - of which he eats little, but does usually manage at least a fruit smoothie or instant breaksfast with fruit once or twice a day and a few nibbles of something from time to time.

I feel strongly that if he can get relief from pain for a decent interval of time, he'll be able to fight this.

If I change medical providers, it won't be effective until Sept. 1, so we feel we have to at least hear this oncologist out and hope he can keep my husband strong enough to get to a better facility. My phone calls were cut short today by this trip to the ER. But I did talk for quite a while with a helpful person at 800-4-cancer and she led me around the website to get materials on treatment, clinical trials, etc.

I read another post where the caregiver asked the oncologist before the visit to please stress living and fighting and not to be negative. I hope to have a chance to do that also.

[john]

This is UNBELIEVABLE. Your husband has had COPD. It seems to me that they would do x-rays fairly often. But anyway, now I would definitely get to a cancer center.

Here is a list of the ones in Ca. There is one right at UC-Davis

Ralph W. deVere White, M.D.

Director

UC Davis Cancer Center

University of California, Davis 4501 X Street, Suite 3003

Sacramento, California 95817

Tel: 916/734-5800

Fax: 916/451-4464

(Clinical Cancer Center)

Frank McCormick, Ph.D.

Director

UCSF Cancer Center & Cancer Research Institute

University of California San Francisco 2340 Sutter Street, Box 0128

San Francisco, California 94115-0128

Tel: 415/502-1710

Fax: 415/502-1712

(Comprehensive Cancer Center)

[john]

BTW - chococat is in Sacramento. She might have referrals as far as

her experience

chococat I hope you don't mind me posting this info.

[Fay A.]

Glo,

I'm so sorry you have need to find us, but want to say welcome. I have personal experience at UC Davis' Cancer Center. Dr. David Gandara has a special interest in Lung Cancer. He's wonderful.

Please get the second opinion asap.

Fay A.

[natalie]

Hi Glo-

I just instant messaged you since I'm in Sacramento too with my email and phone number. I recommend Dr. Gandera at UC Davis, we met with him and he is a lung specialist. If you want to go to Sutter, a heart/thoractic surgeon I know at Sutter recommended Dr. Paul Rosenberg at Sutter Cancer Center.

Hope to talk to you soon.

Natalie